Neurofibromatosis Support Group

I was trying to look at my past posts to see if I told this story before. It kind of makes me feel bad sometime. It is a bit ironic in a way. I've never really had problems because of my bumps. I have however been beaten with hockey sticks and chased by a car for being black. Of all the names I was called at those times, my bumps were never mentioned. Since I can't make my bumps go away and my color is never going to change I just keep on keepng on. You are bound to run into idiots once in a while. Don't let others attitudes dictate how you will live your life. When people ask about your NF or offer advice not all of them are being a jerk, some are just extending a hand and trying to connect. If you slap every hand that reaches out, you miss out on some rare gems. I'm not saying you have to befriend everyone. Just don't become the old man/woman at the end of the block, who never comes out and when they do, they are mean to everyone. My past could have jaded me in many ways. I lost faith in human kind regardless of color for a long while. I'm over it and living my life now. Don't let NF, or other people rob you of living. The sun is going to and set whether you feel happy or sad. Why not be happy?

I hate the bumps I hate the way they look and that makes me hate the way I look. It is true it is worse when the sun hits them you can really see them. I always wish that I had smooth skin. I really try to remember that it can be worse, even with some other things people have, but sometimes it is hard to think that, when I would love to wear what ever I wanted and look like I see other people who don't have this look.

I never knew what NF was until my son was diagnosed. About 3 weeks later I ran into a woman in walmart who obviously had NF. She had bumps & plexiforms & seviere scoliosis. Even with all of that I thought she was a very beautiful. My son has alot of skin abnormalities too and everyone thinks he is so cute(& he is). I think its a perception thing bc his dad hates his cafe au laits too and has covered up most of the large ones with tatoos. Try to remember that you can be the most beautiful person outside and be so unattractive inside.

I have bumps on my scalp. I used to snag them with my comb. I had one hairstylist freak out after she snagged it and it was bleeding. I am tired of people asking about my "acne." Life has be hard. I am afraid of relationships, but right now I have a hard time loving me...

Taqueme... I really appreciate your perspective. Although being black isn't a genetic mutation like NF, it can be something that makes one "different" from other peoples norms, and you can't change that, unless you only associate with people just like you.

My son with NF has been in the hospital numerous times... and I notice that there are A LOT of people who have big challenges unrelated to NF: No legs, seizures, blindness, etc. They didn't choose their condition, either. Some of them learn to live fuller lives than the athletic, smart, beautiful people that we imagine the ideal to be.

None of us get to choose all of our circumstances, but we have choices in how we live in them. Make your life one with purpose!

Yes, I have abput 4 or 5 on my head and they are very visbile when I wear my hait short. It makes so made because they ask questions after question, it can be very hard.

Well always ask me what bite or little kids ahh you have boo boo. I just smile and say that I am alright

Thanks NFdad. I do my best to lead a purpose driven life. Spendng my days crying into my coffee isn't going me anywhere. I don't have chronic pain, I haven't had any operations other than having a tumor removed from my neck when I was a child. My daughters are doing great, I have a beautiful so I have no real complaints. People staring at me, children asking questions, whatever. Kids are always going to ask questions, they aren't trying to hurt you. I won't ramble. Everyone has their own perspective. I choose to live my life in the sun, not hiding from people I don't really want to talk to anyway.

YES!! i have lots of spots and as i get older i'm getting more and more bumps. My husband always complements me but as you said in the back of my mind i wounder. I don't think that i'm pretty and i worry when he looks at another girl(witch most men do) if its because of the way that i look that he has to look at other girls because i don't make him happy. I know sounds stuiped but it is there and will most likly always be there.

I am so glad I found this support group. I am a 60 year old female with NF1.Both children have it but only one Grandchild. I try not to think about it too much because I am afraid it will get to the point where I don't want to leave the house. People stare and some ask about it.I don't really mind as long as they are not rude about it. I fell especially uncomfortable in a restaurant.It feels good to talk to others that know how I feel.